Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-18T07:29:33.004Z Has data issue: false hasContentIssue false

Chapter 7 - Informal Care for Persons with Dementia

Characteristics and Evidence-Based Support Interventions

Published online by Cambridge University Press:  26 May 2022

By
Anja Declercq ,
Rose-Marie Dröes ,
Mary Mittelman  and
Chantal Van Audenhove
Edited by
Mathieu Vandenbulcke ,
Rose-Marie Dröes  and
Erik Schokkaert
Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
Get access

Summary

A vast majority of persons with dementia receive help and support from family members, friends and neighbours. Research shows a high reliance on informal long-term care for persons with dementia. In this chapter we discuss the role of informal care in dementia care and the sustainability of that role. Societal changes have an impact on the availability of informal carers and on the division of tasks between formal and informal care. Taking care of a family member can be rewarding as well as challenging. Depending upon the stage of the dementia process the challenges have differing characteristics and the burden changes. Evidence-based interventions have been developed to support either the person with dementia and their informal carer or the family network of the person with dementia. These interventions can alleviate challenges and support informal carers in their role.

Keywords

informal carefamily caredementiacare processevidence-based interventions
Type
Chapter
Information
Dementia and Society , pp. 129 - 152
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Wimo, A, Gauthier, S, Prince, M. Global Estimates of Informal Care. London, Alzheimer’s Disease International and Karolinska Institutet, 2018.Google Scholar
2020 Alzheimer’s disease facts and figures. Alzheimers Dement 2020 Mar 10. doi: 10.1002/alz.12068. Epub ahead of print.Google Scholar
Alzheimers Research UK. www.dementiastatistics.org/statistics/impact-on-carers.Google Scholar
Harris, PB, Long, S. Husbands and sons in the United States and Japan: Cultural expectations and caregiving experiences. J Aging Stud. 1999; 13(3): 241–67.Google Scholar
Greenwood, N, Smith, R. Motivations for being informal carers of people living with dementia: A systematic review of qualitative literature. BMC Geriatrics 2019; 19: 169.CrossRefGoogle ScholarPubMed
Broese van Groenou, MI, De Boer, A. Providing informal care in a changing society. Eur J Ageing 2016; 13: 271–9.CrossRefGoogle Scholar
Barczyk, D, Kredler, M. Long-term care across Europe and the U.S.: The role of informal and formal care. Fiscal Studies 2019; 40(3): 329–73.CrossRefGoogle Scholar
Schneider, J, Hallam, A, Murray, J, Foley, B, Atkin, L, Banerjee, S, et al. Formal and informal care for people with dementia: Factors associated with service receipt. Aging Ment Health 2002; 6(3): 255–65.Google Scholar
Ydstebø, AE, Benth, JS, Bergh, S, Selbaek, G, Vossius, C. Informal and formal care among persons with dementia immediately before nursing home admission. BMC Geriatrics 2020; 20: 296.Google ScholarPubMed
www.zorgvoorbeter.nl/dementie/cijfersGoogle Scholar
Prince, MJ, Wimo, A, Guerchet, MM, Ali, GC, Wu, Y-T, Prina, M. World Alzheimer Report 2015. The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost and Trends. London, Alzheimer’s Disease International, 2015.Google Scholar
Pickard, L. A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032. Ageing Soc. 2015; 35(1): 96–123.CrossRefGoogle Scholar
Agree, EM, Glaser, K. Demography of informal caregiving. In Uhlenberg, P, ed. International Handbook of Population Aging, vol. I. New York, Springer, 2009; 647–68.Google Scholar
Fischer, B, Müller, K-U. Time to care? The effects of retirement on informal care provision. J Health Econ. 2020; 73: 1–17.CrossRefGoogle ScholarPubMed
Eurostat. https://ec.europa.eu/eurostat/statistics-explained/index.php/Household_composition_statistics#More_and_more_households_consisting_of_adults_living_aloneGoogle Scholar
Lage, DE, Jernigan, MC, Chang, Y, Grabowski, DC, Hsu, J, Metlay, JP, Shah, SJ. Living alone and discharge to skilled nursing facility care after hospitalization in older adults. JAGS 2017; 66(1): 100–5.Google ScholarPubMed
Da Roit, B, Hoogenboom, M, Weicht, B. The gender informal care gap. A fuzzy-set analysis of cross-country variations. Eur Soc. 2015; 17(2): 199–218.Google Scholar
European Institute for Gender Equality. Gender Equality Index 2019. Work-life balance. https://eige.europa.eu/publications/gender-equality-index-2019-report/informal-care-older-people-people-disabilities-and-long-term-care-servicesGoogle Scholar
Zigante, V. Informal Care in Europe. Exploring Formalisation, Availability and Quality. Brussels, European Commission, 2018.Google Scholar
Blendin, K, Pepin, R. Dementia grief: Theoretical model of a unique grief experience. Dementia 2017; 16(1): 67–78.CrossRefGoogle Scholar
Rosser, MN, Fox, NC, Mummery, CJ, Schott, JM, Warren, JD. The diagnosis of early-onset dementia. Lancet Neurol. 2010; 9(8): 793–806.Google Scholar
Tillman, J, Just, J, Schnakenberg, R, Weckbecker, K, Weltermann, B, Münster, E. Challenges in diagnosing dementia in patients with a migrant background: A cross-sectional study among German general practitioners. BMC Family Practice 2019; 20(34): 1–10.CrossRefGoogle Scholar
Krinsky-McHale, SJ, Silverman, W. Dementia and mild cognitive impairment in adults with intellectual disability: Issues of diagnosis. Dev Disabil Res Rev. 2013: 18(1): 31–42.Google Scholar
Rietjens, RL, Sudore, M, Connolly, JJ, Van Delden, MA, Drickamer, M, Droger, M, et al. Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017; 18(9): e543–e551.CrossRefGoogle ScholarPubMed
De Vleminck, A, Houttekier, D, Pardon, K, Deschepper, R, Van Audenhove, C, Vander Stichele, R, Deliens, L. Barriers and facilitators for general practitioners to engage in advance care planning: A systematic review. Scand J Primary Health Care 2013; 31(4): 215–26.CrossRefGoogle ScholarPubMed
Hugo, J, Ganguli, M. Dementia and cognitive impairment: Epidemiology, diagnosis, and treatment. Clin Geriatr Med. 2014; 30(3): 421–42.Google Scholar
Sanders, S, Adams, KB. Grief reactions and depression in caregivers of individuals with Alzheimer’s disease: Results from a pilot study in an urban setting. Health Soc Work 2005: 30(4): 287–95.Google Scholar
Spruytte, N, Van Audenhove, C, Lammertyn, F, Storms, G. The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients. Psychol Psychother. 2002; 75(3): 295–311.Google Scholar
Van Vracem, M, Spruytte, N, Declercq, A, Van Audenhove, C. Agitation in dementia and the role of spatial and sensory interventions: Experiences of professional and family carers. Scan J Caring Sci. 2016; 30(2): 281–9.Google Scholar
Sutcliffe, C, Giebel, C, Bleijlevens, M, Chester, H, Challis, D. Caring for a person with dementia on the margins of long-term care: A perspective on burden from 8 European countries. J Am Med Dir. 2018; 18(11): 967–973.e1.Google Scholar
Huber, M. Towards a New, Dynamic Concept of Health. Its Operationalisation and Use in Public Health and Healthcare, and in Evaluating Health Effects of Food. Maastricht, Maastricht University, 2014.Google Scholar
Dröes, RM, Chattat, R, Diaz, A, Gove, D, Graff, M, Murphy, K, et al. Social health and dementia: A European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health 2017; 21(1): 4–17.CrossRefGoogle ScholarPubMed
Hirschman, KB, Kapo, JM, Karlawish, JHT. Identifying the factors that facilitate or hinder advance care planning by persons with dementia. Alzheimer Dis Assoc Disord. 2008; 22(3): 293–8.Google Scholar
Tilburgs, B, Vernooij-Dassen, M, Koopmans, R, Van Gennip, H, Engels, Y, Perry, M. Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review. PLoS One 2018; 13(6): e0198535.CrossRefGoogle ScholarPubMed
Lund, S, Richardson, A, May, C. Barriers to advance care planning at the end of life: An explanatory systematic review of implementation studies. PLoS One 2015; 10(2): e0116629.Google Scholar
Ingravallo, F, Mignani, V, Mariani, E, Ottoboni, G, Melon, MC, Chattat, R. Discussing advance care planning: Insights from older people living in nursing homes and from family members. Int Psychogeriatr. 2018: 30(4): 569–79.CrossRefGoogle ScholarPubMed
Vandervoort, A, Houttekier, D, Van den Block, L, Van der Steen, JT, VanderStichele, R, Deliens, L. Advance care planning and physician orders in nursing home residents with dementia: A nationwide retrospective study among professional carers and relatives. J Pain Symptom Manag. 2014; 47(2): 245–56.CrossRefGoogle ScholarPubMed
Prince, M, Comas-Herrera, A, Knapp, M. World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia Coverage, Quality and Costs Now and in the Future. London, Alzheimer’s Disease International, 2016.Google Scholar
Daly, RL, Bunn, F, Goodman, C. Shared decision making for people living with dementia in extended care settings: A systematic review. Brit Med J Open 2018; 8: e018977.Google Scholar
Miller, LM, Whitlatch, CJ, Lyons, KS. Shared decision making in dementia: A review of patient and carer involvement. Dementia 2016; 15(5): 1141–57.CrossRefGoogle Scholar
Scholl, I, Koelewijn-Van Loon, M, Sepucha, K, Elwyn, G, Légaré, F, Härter, M, Dirmaier, J. Measurement of shared decision making: A review of instruments. Z Evid Fortbild Qual Gesundhwes. 2011; 105(4): 313–24.Google Scholar
Bae, J. Shared decision making: Relevant concepts and facilitating strategies. Epidemiol Health 2017; 39: e2017048.Google Scholar
Tyrrell, JG, Genin, N, Myslinski, M. Freedom of choice and decision-making in health and social care: Views of older patients with early-stage dementia and their carers. Dementia 2006; 5: 479–502.Google Scholar
Fetherstonhaugh, D, Tarzia, L, Nay, R. Being central to decision making means I am still here! The essence of decision making for people with dementia. J Aging Stud. 2013; 27(2): 143–50.CrossRefGoogle ScholarPubMed
Hirschman, KB, Joyce, CM, James, BD, Xie, SX, Karlawish, JH. Do Alzheimer’s disease patients want to participate in a treatment decision, and would their carers let them? Gerontologist 2005; 45(3): 381–8.Google Scholar
Ampe, S, Sevenants, A, Coppens, E, Spruytte, N, Smets, T, Declercq, A, Van Audenhove, C. Study protocol for ‘We DECide’: Implementation of advance care planning for nursing home residents with dementia. J Adv Nurs. 2015; 71(5): 1156–68.Google Scholar
Elwyn, G, Frosch, D, Thomson, R, Joseph-Williams, N, Lloyd, A, Kinnersley, P, et al. Shared decision making: A model for clinical practice. J Gen Intern Med. 2012; 27(10): 1361–7.CrossRefGoogle Scholar
Ampe, S, Sevenants, A, Declercq, A, Van Audenhove, C. Advance care planning for nursing home residents with dementia: Influence of ‘We DECide’ on policy and practice. Patient Educ Couns. 2017; 100(1): 139–46.CrossRefGoogle ScholarPubMed
Goossens, B, Sevenants, A, Declercq, A, Van Audenhove, C. ‘We DECide optimised’: Training nursing home staff in shared decision-making skills for advance care planning conversations in dementia care: Protocol of a pretest-posttest cluster randomized trial. BMC Geriatr. 2019; 19(3): 33.Google Scholar
Goossens, B, Sevenants, A, Declercq, A, Van Audenhove, C. Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care. Patient Educ Couns. 2019; 103(4): 839–47.Google ScholarPubMed
Sinclair, C, Gates, K, Evans, S, Auret, KA. Factors influencing Australian general practitioners’ clinical decisions regarding advance care planning: A factorial survey. J Pain Symptom Manage. 2016; 51(4): 718–27.CrossRefGoogle ScholarPubMed
Romøren, M, Pedersen, R, Førde, R. How do nursing home doctors involve patients and next of kin in end-of-life decisions? A qualitative study from Norway. BMC Med Ethics 2016; 17(5).CrossRefGoogle ScholarPubMed
De Vleminck, A, Pardon, K, Beernaert, K, Deschepper, R, Houttekier, D, Van Audenhove, C, et al. Barriers to advance care planning in cancer, heart failure and dementia patients: A focus group study on general practitioners’ views and experiences. PLoS One 2014; 9(1): e84905.CrossRefGoogle Scholar
Fosse, A, Ruths, S, Malterud, K, Schaufel, MA. Doctors’ learning experiences in end-of-life care: A focus group study from nursing homes. BMC Med Educ. 2017; 17(1): 27.Google Scholar
Corazinni, K, Twersky, J, White, HK, Buhr, GT, McConnell, ES, Weiner, M, Colón-Emeric, CS. Implementing culture change in nursing homes: An adaptive leadership framework. Gerontologist 2015; 55(4): 616–27.Google Scholar
Goffman, E. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. New York, Anchor Books, 1961.Google Scholar
Dröes, RM, Goffin, JJM, Breebaart, E, De Rooij, E, Vissers, H, Bleeker, JAC, Van Tilburg, W. Support programmes for carers of people with dementia: A review of methods and effects. In Miesen, B, Jones, G, eds. Care-Giving in Dementia III. London, Routledge, 2004; 214–39.Google Scholar
Brodaty, H, Gresham, M, Luscombe, G. The Prince Henry Hospital Dementia Carers’ Training Programme. Int J Geriatr Psychiatry 1997; 12(2): 183–92.3.0.CO;2-J>CrossRefGoogle Scholar
Moniz-Cook, E, Agar, S, Gibson, G, Win, T, Wang, M. A preliminary study of the effects of early intervention with people with dementia and their families in a memory clinic. Aging Ment Health 1998; 2(3): 199–211.Google Scholar
Dröes, RM, Breebaart, E. Amsterdamse Ontmoetingscentra; een nieuwe vorm van ondersteuning voor dementerende ouderen en hun verzorgers. Voorstudie. [Amsterdam meeting centres: A new form of support for older people with dementia and their carers. A preliminary study.] Amsterdam, Thesis Publishers, 1994.Google Scholar
Dröes, RM, Breebaart, E, Van Tilburg, W, Mellenbergh, GJ. The effect of integrated family support versus day care only on behavior and mood of patients with dementia. Int Psychogeriatr. 2000; 12(1): 99–116.CrossRefGoogle ScholarPubMed
Gendron, CE, Poitras, LR, Engels, ML, Dastoor, DP, Sirota, SE, Barza, SL, et al. Skills training with supporters of the demented. J Am Geriatr Soc. 1986; 34(12): 875–80.CrossRefGoogle ScholarPubMed
Hébert, R, Leclerc, G, Bravo, G, Girouard, D, Lefrançois, R. Efficacy of a support group programme for carers of demented patients in the community: A randomized controlled trial. Arch Gerontol Geriatr. 1994; 18(1): 1–14.CrossRefGoogle ScholarPubMed
Zarit, SH, Anthony, CR, Boutselis, M. Interventions with carers of dementia patients: Comparisons of two approaches. Psychol Aging 1987; 2(3): 225–32.CrossRefGoogle Scholar
Zarit, SH, Stephens, MA, Townsend, A, Greene, R. Stress reduction for family carers: Effects of adult day care use. J Gerontol B Psychol Sci Soc Sci. 1998; 53(5): S267–S277.Google Scholar
Mohide, EA, Pringle, DM, Streiner, DL, Gilbert, JR, Muir, G, Tew, M. A randomized trial of family carer support in the home management of dementia. J Am Geriatr Soc. 1990; 38(4),446–54.Google Scholar
Vernooij-Dassen, MJFJ, Persoon, JMG. Het thuismilieu van dementerende ouderen. Een interventie-onderzoek naar effecten van professionele ondersteuning van gezins- en familieleden van dementerende ouderen. Nijmegen, Instituut voor Sociale Geneeskunde, Katholieke Universiteit Nijmegen, 1990.Google Scholar
Duijnstee, M. De belasting van familieleden van dementerenden. Nijkerk, Intro, 1992.Google Scholar
Thomas, S, Dalton, J, Harden, M, Eastwood, A, Parker, G. Updated Meta-Review of Evidence on Support for Carers. Southampton, NIHR Journals Library, 2017.CrossRefGoogle ScholarPubMed
Knight, BG, Lutzky, SM, Macofsky-Urban, F. A meta-analytic review of interventions for carer distress: Recommendations for future research. Gerontologist 1993; 33(2): 240–8.CrossRefGoogle ScholarPubMed
Maayan, N, Soares-Weiser, K, Lee, H. Respite care for people with dementia and their carers. Cochrane Database Syst Rev. 2014; 1: CD004396.Google Scholar
Tretteteig, S, Vatne, S, Rokstad, AM. The influence of day care centres for people with dementia on family carers: An integrative review of the literature. Aging Ment Health 2016; 20(5): 450–62.CrossRefGoogle ScholarPubMed
Maffioletti, VLR, Baptista, MAT, Santos, RL, Rodrigues, VM, Dourado, MCN. Effectiveness of day care in supporting family carers of people with dementia: A systematic review. Dement Neuropsychol. 2019; 13(3): 268–83.Google Scholar
Dröes, RM, Breebaart, E, Meiland, FJM, Van Tilburg, W, Mellenbergh, GJ. Effect of meeting centres support programme on feeling of competence of family carers and delay of institutionalization of people with dementia. Aging Ment Health 2004; 8(3): 201–11.Google Scholar
Dröes, RM, Meiland, FJM, Schmitz, MJ, Van Tilburg, W. Effect of the meeting centres support program on informal carers of people with dementia: Results from a multi-centre study. Aging Ment Health 2006; 10(2): 112–24.CrossRefGoogle ScholarPubMed
Van Mierlo, LD, Meiland, FJM, Dröes, RM. Dementelcoach: Effect of telephone coaching on carers of community dwelling people with dementia. Int Psychogeriatr. 2012; 24(2): 212–22.Google Scholar
Miesen, B, Jones, G, eds. Care-Giving in Dementia III. London, Routledge, 2004.Google Scholar
Capus, J. The Kingston dementia café: The benefits of establishing an Alzheimer café for carers and people with dementia. Dementia 2005; 4(4): 588–91.Google Scholar
Greenwood, N, Smith, R, Akhtar, F, Richardson, A. A qualitative study of carers’ experiences of dementia cafés: A place to feel supported and be yourself. BMC Geriatrics 2017; 17: 164.CrossRefGoogle ScholarPubMed
Teahan, Á, Fitzgerald, C, O’Shea, E. Family carers’ perspectives of the Alzheimer café in Ireland. HRB Open Research 2020; 3: 18.Google Scholar
Dow, B, Haralambous, B, Hempton, C, Hunt, S, Calleja, D. Evaluation of Alzheimer’s Australian Vic Memory Lane Cafés. Int Psychoger. 2011; 23(2): 246–55.Google Scholar
Merlo, P, Devita, M, Mandelli, A, Rusconi, ML, Taddeucci, R, Terzi, A, et al. Alzheimer café: An approach focused on Alzheimer’s patients but with remarkable values on the quality of life of their carers. Aging Clin Exp Res. 2018; 30(7): 767–74.Google Scholar
Jones, SM, Killett, A, Mioshi, E. What factors predict family carers’ attendance at dementia cafés? J Alzheimers Dis. 2018; 64(4): 1337–45.Google Scholar
Chien, LY, Chu, H, Guo, JL, Liao, YM, Chang, LI, Chen, CH, Chou, KR. Carer support groups inpatients with dementia: A meta-analysis. Int J Geriatr Psychiatry 2011; 26(10): 1089–98.Google Scholar
Lins, S, Hayder-Beichel, D, Rücker, G, Motschall, E, Antes, G, Meyer, G, Langer, G. Efficacy and experiences of telephone counselling for informal carers of people with dementia. Cochrane Database Syst Rev. 2004; 9: CD009126.Google Scholar
Salfi, J, Ploeg, J, Black, ME. Seeking to understand telephone support for dementia carers. West J Nurs Res. 2005; 27(6): 701–21.CrossRefGoogle Scholar
Jackson, D, Roberts, G, Wu, ML, Ford, R, Doyle, C. A systematic review of the effect of telephone, internet or combined support for carers of people living with Alzheimer’s, vascular or mixed dementia in the community. Arch Gerontol Geriatr. 2016; 66: 218–36.CrossRefGoogle ScholarPubMed
Huijsman, R, Boomstra, R, Veerbeek, M, Döpp, C, eds. Dutch Standard of Dementia Care [Zorgstandaard Dementie]: Samenwerken op maat voor personen met dementie en mantelzorgers. Utrecht, Dementiezorg voor elkaar, 2020.Google Scholar
Mantovan, F, Ausserhofer, D, Huber, M, Schulc, E, Them, C. Interventionen und deren Effekte auf pflegende Angehörige von Menschen mit Demenz – Eine systematische Literaturübersicht. Pflege 2010; 23(4): 223–39.CrossRefGoogle Scholar
Berthelsen, CB, Kristensson, J. The content, dissemination and effects of case management interventions for informal carers of older adults: A systematic review. Int J Nurs Stud. 2015; 52(5): 988–1002.CrossRefGoogle ScholarPubMed
Peeters, JM, De Lange, J, Van Asch, I, Spreeuwenberg, R, Veerbeek, M, Pot, AM, Francke, AL. Landelijke evaluatie van casemanagement dementie. Utrecht, NIVEL, 2012.Google Scholar
MacNeil Vroomen, J, Bosmans, JE, Eekhout, I, Joling, KJ, Van Mierlo, LD, Meiland, FJM, et al.The cost-effectiveness of two forms of case management compared to a control group for persons with dementia and their informal carers from a societal perspective. PLoS ONE 2016; 11(9): e0160908.CrossRefGoogle ScholarPubMed
Jensen, M, Agbata, IN, Canavan, M, McCarthy, G. Effectiveness of educational interventions for informal carers of individuals with dementia residing in the community: Systematic review and meta-analysis of randomised controlled trials. Int J Geriatr Psychiatry 2015; 30(2): 130–43.CrossRefGoogle ScholarPubMed
Tang, WK, Chan, CY. Effects of psychosocial interventions on self-efficacy of dementia carers: A literature review. Int J Geriatr Psychiatry 2016; 31(5): 475–93.CrossRefGoogle ScholarPubMed
Selwood, A, Johnston, K, Katona, C, Lyketsos, C, Livingston, G. Systematic review of the effect of psychological interventions on family carers of people with dementia. J Affect Disord. 2007; 101(1–3): 75–89.Google Scholar
Eggenberger, E, Heimerl, K, Bennett, MI. Communication skills training in dementia care: A systematic review of effectiveness, training content, and didactic methods in different care settings. Int Psychogeriatr. 2013; 25(3): 345–58.CrossRefGoogle Scholar
Vandepitte, S, Van den Noortgate, N, Putman, K, Verhaeghe, S, Faes, K, Annemans, L. Effectiveness of supporting informal carers of people with dementia: A systematic review of randomized and Non-randomized controlled trials. J Alzheimer’s Dis. 2016; 52(3): 929–65.Google ScholarPubMed
Li, R, Cooper, C, Barber, J, Rapaport, P, Griffin, M, Livingston, G. Coping strategies as mediators of the effect of the START (strategies for RelaTives) intervention on psychological morbidity for family carers of people with dementia in a randomised controlled trial. J Affect Disord. 2014; 168: 298–305.Google Scholar
Gilhooly, KJ, Gilhooly, ML, Sullivan, MP, McIntyre, A, Wilson, L, Harding, E, et al. A meta-review of stress, coping and interventions in dementia and dementia caregiving. Review. BMC Geriatrics 2016; 16(106): 1–8.CrossRefGoogle ScholarPubMed
Pinquart, M, Sörensen, S. Helping carers of persons with dementia: Which interventions work and how large are their effects? Int Psycogeriatr. 2006; 18(4): 577–95.Google ScholarPubMed
Vernooij-Dassen, M, Draskovic, I, McCleery, J, Downs, M. Cognitive reframing for carers of people with dementia. Cochrane Database Syst Rev. 2011; 11: CD005318.Google Scholar
Ducharme, F, Lachance, L, Lévesque, L, Zarit, SH, Kergoat, MJ. Maintaining the potential of a psycho-educational program: Efficacy of a booster session after an intervention offered family carers at disclosure of an relative’s dementia diagnosis. Aging Mental Health 2015; 19(3): 207–16.Google Scholar
Boots, LM, De Vugt, ME, Van Knippenberg, RJ, Kempen, GI, Verhey, FR. A systematic review of internet-based supportive interventions for carers of patients with dementia. Int J Geriatr Psychiatry 2014; 29(4): 331–44.Google Scholar
Hopwood, J, Walker, N, McDonagh, L, Rait, G, Walters, K, Iliffe, S, et al. Internet-based interventions aimed at supporting family carers of people with dementia: Systematic review. J Med Internet Res. 2018; 20(6): e216.Google Scholar
Kerkhof, Y, Pelgrum-Keurhorst, M, Mangiaracina, F, Bergsma, A, Vrauwdeunt, G, Graff, M, Dröes, RM. User-participatory development of FindMyApps: A tool to help people with mild dementia find supportive apps for self-management and meaningful activities. Digital Health 2019; 26: 5.Google Scholar
Kerkhof, Y, Kohl, G, Veijer, M, Mangiaracina, F, Bergsma, A, Graff, M, Dröes, ML. Randomized controlled feasibility study of FindMyApps: First evaluation of a tablet-based intervention to promote self-management and meaningful activities in people with mild dementia. Disabil Rehabil Assist Technol. 2020; 19: 1–15.Google Scholar
Beentjes KM, Kerkhof YJF, Neal DP, Ettema TP, Koppelle MA, Meiland FJM, Graff M, Dröes RM. Process evaluation of the FindMyApps program trial among people with dementia or MCI and their caregivers based on the MRC guidance. Gerontechnology 2021; 20(1): 1–15. https://doi.org./10.4017/gt.2020.20.1.406.11.Google Scholar
Smits, CHM, De Lange, J, Dröes, RM, Meiland, F, Vernooij-Dassen, M, Pot, AM. Effects of combined intervention programmes for people with dementia living at home and their carers: A systematic review. Int J Geriatr Psychiatry. 2007; 22(12): 1181–93.Google Scholar
Olazaran, J, Reisberg, B, Clare, L, Cruz, I, Peña-Casanova, J, et al. Nonpharmacological therapies in Alzheimer’s disease: A systematic review of efficacy. Dement Geriatr Cogn Disord. 2010; 30: 161–78.Google Scholar
Laver, K, Milte, R, Dyer, S, Crotty, M. A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia. J Aging Health 2017; 29(8): 1308–49.Google Scholar
Van’t Leven, N, Prick, A-EJ, Groenewoud, JG, Roelofs, PD, De Lange, J, Pot, AM. Dyadic interventions for community-dwelling people with dementia and their family carers: A systematic review. Int Psychogeriatr. 2013; 25(10): 1581–1603.Google ScholarPubMed
Beentjes, KM, Neal, DP, Kerkhof, Y, Broeder, C, Moeridjan, Z, Ettema, TP, et al. Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers: An exploratory pilot randomised controlled trial. Disabil Rehabil: Assist Technol. 2020; 1–13. Advance online publication. https://doi.org/10.1080/17483107.2020.1842918Google Scholar
Dröes, RM, Meiland, FJM, Schmitz, M, Van Tilburg, W. Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: Results from a multi-centre implementation study. Int J Geriatric Psychiatr. 2004; 19: 673–84.CrossRefGoogle ScholarPubMed
Brooker, D, Evans, SC, Evans, SB, Bray, J, Saibene, FL, Scorolli, C, et al. Evaluation of the implementation of the meeting centres support program in Italy, Poland, and the UK: Exploration of the effects on people with dementia. Int J Geriatric Psychiatry 2018; 33(7): 883–92.CrossRefGoogle ScholarPubMed
Szcześniak, D, Rymaszewska, J, Saibene, FL, Urbańska, K, d’Arma, A, Brooker, D, et al. Meeting centres support programme highly appreciated by people with dementia and carers: A European cross-country evaluation. Aging Ment Health 2019; 5: 1–11.Google Scholar
Dröes, RM, Van Mierlo, LD, Meiland, FJM, Van der Roest, HG. Memory problems in dementia: Adaptation and coping strategies, and psychosocial treatments. Expert Rev Neurother. 2011; 11(12): 1769–82.Google Scholar
Dröes, RM, Van Rijn, A, Rus, E, Dacier, S, Meiland, F. Utilization, effect, and benefit of the individualized meeting centers support program for people with dementia and carers. Clin Interv Aging 2019; 14: 1527–53.CrossRefGoogle Scholar
Chien, WT, Lee, YM. A disease management program for families of persons in Hong Kong with dementia. Psychiatr Serv. 2008; 59: 433–6.CrossRefGoogle Scholar
Chien, WT, Lee, YM. Randomized controlled trial of a dementia care programme for families of home-resided older people with dementia. J Adv Nurs. 2011; 67: 774–87.Google Scholar
Gitlin, LN, Hauck, WW, Dennis, MP, Winter, L. Maintenance of effects of the home environmental skill-building program for family carers and individuals with Alzheimer’s disease and related disorders. J Gerontol A: Biol Sci Med Sci. 2005; 60: 368–74.CrossRefGoogle ScholarPubMed
Graff, MJL, Vernooij-Dassen, MJM, Thijssen, M, Dekker, J, Hoefnagels, WHL, Olderikkert, MG. Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their carers: A randomized controlled trial. J Gerontol A: Biol Sci Med Sci. 2007; 62: 1002–9.CrossRefGoogle ScholarPubMed
Waldorff, F, Buss, D, Eckermann, A, Rasmussen, M, Keiding, N, Rishoj, S, Waldemar, G. Efficacy of psychosocial intervention in patients with mild Alzheimer’s disease: The multicentre, rater blinded, randomised Danish Alzheimer Intervention Study (DAISY). British Med J 2012; 345(7870): e4693.CrossRefGoogle ScholarPubMed
Zarit, SH, Zarit, JM, Reever, KE. Memory training for severe memory loss: Effects on senile dementia patients and their families. Gerontologist 1982; 22: 373–7.Google Scholar
Mittelman, M, Ferris, S, Shulman, E, Steinberg, G, Ambinder, A, Mackell, J, Cohen, J. A comprehensive support program: Effect on depression in spouse-carers of AD patients. Gerontologist 1995; 35(6): 792–802.CrossRefGoogle Scholar
Mittelman, MS, Roth, DL, Coon, DW, Haley, WE. Sustained benefit of supportive intervention for depressive symptoms in Alzheimer’s carers. Am J Psychiatry 2004; 161(5): 850–6.Google Scholar
Jang, Y, Clay, OJ, Roth, DL, Haley, WE, Mittelman, MS. Neuroticism and longitudinal change in carer depression: Impact of a spouse-carer intervention program. Gerontologist 2004; 44(3): 311–17.Google Scholar
Gaugler, JG, Roth, DL, Haley, WE, Mittelman, MS. Can counseling and support reduce Alzheimer’s carers’ burden and depressive symptoms during the transition to institutionalization? Results from the NYU Intervention Study. J Am Geriatr Soc. 2008; 56(3): 421–8.Google Scholar
Haley, WE, Bergman, EJ, Roth, DL, McVie, T, Gaugler, JE, Mittelman, MS. Long-term effects of bereavement and carer intervention on dementia carer depressive symptoms. Gerontologist 2008; 48(6): 732–40.Google Scholar
Mittelman, MS, Roth, DL, Haley, WE, Zarit, SH. Effects of a carer intervention on negative carer appraisals of behavior problems in patients with Alzheimer’s disease: Results of a randomized trial. J Gerontol B Psychol Sci Soc Sci. 2004; 59(1): 27–34.CrossRefGoogle ScholarPubMed
Mittelman, MS, Roth, DL, Clay, OJ, Haley, WE. Preserving health of Alzheimer’s carers: Impact of a spouse carer intervention. Am J Geriatr Psychiatry 2007; 150(9): 780–9.Google Scholar
Roth, DL, Mittelman, MS, Clay, OJ, Madan, A, Haley, WE. Changes in social support as mediators of the impact of a psychosocial intervention for spouse carers of persons with Alzheimer’s disease. Psychol Aging 2005; 20(4): 634–44.Google Scholar
Drentea, P, Clay, OJ, Roth, DL, Mittelman, MS. Predictors of improvement in social support: Five-year effects of a structured intervention for carers of spouses with Alzheimer’s disease. Soc Sci Med. 2006 Aug; 63(4): 957–67. PMID: 16616406Google Scholar
Mittelman, MS, Haley, WE, Clay, O, Roth, DL. Improving carer well-being delays nursing home placement of patients with Alzheimer disease. Neurology 2006; 67(9): 1592–9.Google Scholar
Rice, JD, Sperling, SA, Brown, DS, Mittelman, MS, Manning, CA. Evaluating the efficacy of TeleFAMILIES: A telehealth intervention for caregivers of community-dwelling people with dementia. Aging Ment Health 2021 Jun; 14: 1–7. doi: 10.1080/13607863.2021.1935462. Epub ahead of print. PMID: 34125635Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×